Thursday, June 17, 2010


Well the overnight oxygen study did not go as well as we hoped. To be honest, we had a feeling right from the start. The machine was beeping way more than usual. Figures on testing night of all nights. Pulmonary said he had too many episodes of lower oxygen (80's). He recovers very well and shoots right back to the 90's but they still don't like the number of them. I am hoping it was just an "off" night and not some sort of new trend. I really had psyched myself up that he was ready. I guess I'm the one who is ready.

I'm sure you can read my disappointment. Don't get me wrong, I know its not the end of the world certainly. I just hate the battle every night of putting the dumb things in his nose as he tries his hardest to fight us and then taping it to his face so hopefully he doesn't pull it off in the middle of the night. and then his sweet sensitive skin is all irritated from the tape. argh. there could and are much worse things I know so I guess I'm just having one of those woe is me nights.

What bothered me the most was pulmonary saying they'd like to refer him to a sleep clinic to see what might be underlying this (its been over three months since his pneumonia so a long time to still be needing oxygen). Ofcourse with his spina bifida they threw out wanting to rule out chiari issues. Arnold Chiari malformation is something that all people with spina bifida have, it is the pulling down of the brain stem. Many individuals never have any symptoms due to this. Although it is something that many of us learn about right during pregnancy and fret about. There are many symptoms or complications that a small percentage of people can have. In infants, breathing and swallowing issues top the list. Honestly whenever Alex is having a health issue, its always in the back of my mind (okay sometimes not so far back) is this shunt related? Is it working properly, should we get it checked? Its been a long time since I worried about Chiari.

I really think if his breathing issues were due to Chiari, it would be more severe, not this subtle. I really think more than likely they are being overly cautious and I"m fine if he still needs to have the oxygen but why did they have to stick the possibility of Chiari problems in my head? He was so premature and all the scarring of his lungs, I"m thinking even though his last chest xrays looked better, maybe he's still just healing them. Well they suggested that we consider going to a sleep clinic to assess what is going on (because you know we are getting pretty bored with the number of specialists and appointments we have now, ha). Mark and I questioned them on the need for the referral this soon. We also discussed that we think Alex is having a flare up in his reflux and having his meds increased and couldn't that be contributing to these issues and she agreed. So long story short (oh right, I don't do short so well, do I?) we are back on the oxygen and re-trying the overnight study in two weeks. If he's not improved, then we agreed we'd do the sleep clinic.

For any parents who might be reading this that have any experience in the sleep clinic, would love to hear more information. or any one with experience with SB and difficulty weaning from oxygen, would love to hear your experience especially. THANKS so much!!!


Anonymous said...

Hi, I have just recently run across your blog on the Spina Bifida kids site. It got my interest because we also have twins, one with SB. She has had (and continues to have) difficulties with breathing issues. It's been a long road. We had one sleep study already and will soon be having a second. I would be happy to tell you our experience (all be it a very "non-technical version) :-) Feel free to email me at Or, facebook at

Your boys are gorgeous by the way! :-)

Stephanie said...

Hi Holli,

I totally understand what you are going through. We have been through a few sleep studies. I'm going to send you a more detailed e-mail in FB. I'm sorry you didn't get better news! Hang in there!

Jill said...

Hugs Holli! Woe is me nights happen to all of us. The Chiari is always on my mind too. Good luck with the next overnight.